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Policy vs Need

“I can’t process your application with the information I’ve been given,” the woman on the phone is officious, likely hates her job, I theorize.  “Your doctor has only sent me four medical reports; there is not enough here to support an inability to work.”

th-4I might have guffawed at this.  “I can barely manage day-to-day living,” I tell her, “working isn’t even within my realm of capabilities right now.”

“I’m not challenging your diagnosis,” she is quick to reassure me.  “But I need empirical evidence.  There is nothing here to indicate what treatment regimes have been tried and failed.”

I explain about the chemical sensitivity – how every drug we have tried has had an adverse effect, some landing me in emergency.

“I don’t see that in your paperwork.”

I rack my brain for when we discovered that – even before my diagnosis, I think.

I tell her about how I am unable to drive, have cognitive impairment, and suffer from systemic exhaustion.

“I don’t see any evidence of that here.”

I get it.  She is performing a clerical job, and has boxes to tick.  No wonder she is so defensive.  Imagine having to call up severely disabled individuals and tell them that short of going back to work, there is no help for them as far as their government is concerned.

th-3Three years I have been homebound – two of that bedbound.  My case has been documented by my current insurance company every three months during this time.  At the two-year mark, my long-term disability provider required that I apply for CPP (Canadian Pension Plan) disability coverage.  At this point, I had imagined it would be simply procedural.

“You will have to appeal it; hopefully, your doctor will provide better records at that time.”

“So you’re telling me I’m between a rock and hard place.”

“Nooo…your coverage will continue with your current company.  We just have stricter requirements than they do.”

th-2“And likely no knowledge of this disease…” I add, cynically.  She doesn’t admit it, but it’s true.  Myalgic Encephalomyelitis (aka Chronic Fatigue Syndrome) falls outside of the scope of knowledge of many fields affecting well-being – medical, governmental, insurance, etc.

“How can I help you…help this process?”  I ask.  “Believe me when I say, I am not in a position to resume my life, and my need for support is very real.”

“Well, let me give it further consideration,”  she says.

She hangs up and I am struck by such a feeling of helplessness that I can’t move.

What happens to people who don’t have company benefits?  I wonder.  What happens to those who are fighting this battle alone?  Who advocates for them?

“I came this close to losing my home,”  I remember another telling me about her journey with ME/CFS.  She was forced to quit her professional practice and apply for disability at a time when even less was known about the disease.

I know that there have been cases of abuse and fraud that have forced stricter regulations.  That’s why insurance companies pay for surveillance, and make the sick jump through so many hoops.  I fail to understand why the government deems it necessary to have stricter criteria.

It’s been days since this conversation, yet still I am haunted by the realization that there are individuals suffering with physical, mental, or emotional disabilities who are not getting the support and services they need.  I am not alone in this fight.  I am one of many.  I am luckier than most.

Something needs to change.

I’m reminded of a poem I originally wrote in October of 2016:  What Future?

(Visit Solve ME/CFS Initiative for more information about this disease.)

 

 

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Categories: disability education Health ME/CFS nonfiction

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V.J. Knutson

Writer, avid reader, former educator, and proud grandmother, currently experiencing life through the lens of ME/CFS. Words are, and always have been, a lifeline. Some of the best adventures, I'm discovering, take place in the imagination.

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